LIBERATION TODAY

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby NotFound » Wed Jun 30, 2010 1:21 pm

CCSVIhusband wrote:Her symptoms BEFORE liberation were:

1. Vertigo (came and went)
2. Dizziness (came and went)
3. L'hermittes (first symptom - has been around for 3 years)
4. Both foot numbness (what caused us to go see doctor initially) - had spread up legs at one point but then back down to ankles/feet more recently
5. Leg pain (feeling of tightness/squeezing in calves - always around)
6. Left leg feeling of dragging/weakness
7. Optic Neuritis (never bad - has resolved for the most part)
8. Balance issues
9. Fatigue (MS fatigue)



One by one those are my symptoms, though I think I am further along...

If your Doctor does not mind, can I have his information via PM please?
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Postby Drury » Wed Jun 30, 2010 1:54 pm

How happy we all are to hear such positive results and thank you for taking the time out of your trip to Montreal to update us.

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Postby MaggieMae » Wed Jun 30, 2010 5:53 pm

If someone has May-Thurner Syndrome, could they possibly have swelling in their right leg or is just the left leg that is usually involved? My husband (about six months ago) noticed swelling in his right leg. Naturally, we visited his PCP who ran tests and found no blood clots. Nurse at neurologist said it was due to his MS.
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Postby newlywed4ever » Wed Jun 30, 2010 7:26 pm

MaggieMae - this was posted in the CCSVI available in US thread:
Cece wrote:Symptoms of May Thurner are: leg swelling and pain, blood clots, deep vein thrombosis

"Patients with May-Thurner syndrome are often young and middle-aged women, and they frequently present with left lower extremity swelling or pain" (http://www.ajronline.org/cgi/content/full/183/5/1523)

Dr. Zamboni has suggested it is linked more to progressive cases, not relapsing remitters. This is logical enough since it is near the spine, not the brain.
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Postby Cece » Wed Jun 30, 2010 7:49 pm

I'll add that it is most commonly found on the left but can be found on the right as well.
http://www.springerlink.com/content/n850048654602082/
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby CCSVIhusband » Wed Jun 30, 2010 8:21 pm

newlywed4ever wrote:MaggieMae - this was posted in the CCSVI available in US thread:
Cece wrote:Symptoms of May Thurner are: leg swelling and pain, blood clots, deep vein thrombosis

"Patients with May-Thurner syndrome are often young and middle-aged women, and they frequently present with left lower extremity swelling or pain" (http://www.ajronline.org/cgi/content/full/183/5/1523)

Dr. Zamboni has suggested it is linked more to progressive cases, not relapsing remitters. This is logical enough since it is near the spine, not the brain.


That's only sort of "fact" there newlywed4ever ...

Granted, what my wife had was probably the worst case scenario - because:

A) May-Thurner causes blood to flow back from the legs, not through the iliac vein ... but through the vertebrals and then into the azygous - INSTEAD of through the IVC via the iliac (a much bigger vein).

B) In her case, the azygous was blocked as well ... so not only was the azygous system taking bloodflow due to the blockage in the iliac ... it was blocked too ... so the blood had nowhere to go BUT into the spinal cord.

However, my wife's condition was not at this point considered "progressive" ... granted she was only diagnosed 6 months ago, but keep in mind her first symptom has been around 3 years for sure (l'hermittes) and potentially longer (a symptom appeared back in college for her - almost 9 years ago).

And she still had remitting symptoms regularly (dizziness/vertigo/optic neuritis).

So ... don't go painting the "progressive" brush with the May-Thurner.

NOW, my next post is going to be the things our doctor and the nurses said about the procedure ...

some very interesting stuff (again considering they're coming from a highly regarded medical professional).
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Postby CCSVIhusband » Wed Jun 30, 2010 8:41 pm

OK, so things we 'learned' from my wife's procedure:

May-Thurner isn't necessarily related to CCSVI, but can contribute to issues.
- After reading Dr. Sclafani's learnings from his visit to Dr. Zamboni, we thought it made complete sense in the case of my wife. Her left leg, while not necessarily swollen, was often 'red'. So we asked our doctor to enter through the left (he hadn't been prior to her). Lo and behold, May-Thurner. When coupled with a blocked azygous due to a "web" he said he's glad this was caught early because it could have been bad.

The doctor believes that as symptoms disappear, they will do so as the issues are resolved in those veins. So if you're left with major symptoms after CCSVI, you've either had permanent damage, or they didn't get the right veins. He said, if you have MS, you're going to have CCSVI - no doubt about it. No matter how newly diagnosed to MS you are, you're going to have it. So why not treat it right away when the damage of MS isn't permanent?

He said he doesn't understand the resistance to the CCSVI theory, as he's seen some really amazing things in his procedures both on the table and for days/weeks/months after.

He openly talks about CCSVI being the major contributor to developing MS. Maybe not in all cases, but keep in mind he found 100% of his patients to have CCSVI.

He said, if your symptoms go away (especially physical ones) and stay away for a while, and then come back ... you've likely re-stenosed (or re-developed whatever issue you had with your vein) and should go be treated again.

He's said stents in his opinion aren't his first option, but he has no fear of using them. He did use them in a first time visit last week, but in my wife's case did angio as it held during the procedure, however, during follow-up that is an option.

He thinks there are more issues involved in CCSVI than just the jugulars and azygous (think hemi-azygous, accessory hemi-azygous, lumbars, vertebrals, iliac, renal) ... he said not all of those are going to be treatable, but opening paths to the heart at the main junctions is the way to go as it will put more flow pressure back through those other areas and likely resolve overall flow issues.

He seemed to imply neurologists aren't ever going to be on-board with this, until CCSVI is separated from MS. And then it's going to be 'taken' from them. He said, this makes more sense than any "the body turns on itself for no particular reason 20-some years into your life theory".

I forget a lot already I wanted to report, but like I said, the doctor wasn't shy about talking about CCSVI to us, his nurses, other doctors.

I have had a lot of people write me and ask if I'd let them know which doctor we used. I'm sorry, I'm not going to do that, and I'm sorry I'm not responding. I said before, it is being paid forward through proper channels ... just as it was to us. But for some reasons, I can't give his name to everyone ... also to those from Canada, I'm sorry ... that's another issue altogether. I am going to continue getting doctors involved, and as I do, I will be happy to pass those names on as well ... in fact I have a few I already have to some people ... but again, I have to do so discretely because of things like happened to Dr. Sclafani.

There are things starting up in a lot of places though, already recently and in the near future. ALL over, not just interventional radiologists either ... vascular surgeons, cardiovascular surgeons, neurovascular doctors, and the like. My best advice is to write all of them, get them involved. It's not as hard as it sounds.

My wife had a 10 inch balloon in her azygous too ... can you believe that? 10 inches? CRAZY.

*EDIT*

He also said follow-up regularly is going to be critical. He said to think this is going to be resolved after one visit is crazy. He thinks you need to give it time and see what changes/develops, and then go back and see how a second round of in the veins compares to the first ... but if you're going to Poland/Bulgaria/India how are you going to do that? He said people need to go to a doctor they can get back to easily if they need and that knowing your doctor is as important as how aggressive they treat something right away and then never see you again because it's 1/2 way around the world.
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Postby CCSVIhusband » Wed Jun 30, 2010 8:57 pm

NOW I REMEMBER:

WE HAD TALKED ABOUT THIS ONE BEFORE AND I FORGOT ... BECAUSE THIS IS THE ONE I REALLY WANTED TO SHARE.

He said, he doesn't believe MS fits into categories. ALL MS is progressive ... it's just time and how bad the veins are.

Cece and I had that discussion in one thread or another ... that
... MS = [CCSVI (in which vein) * how bad the vein is stenosed] + time.

That's EXACTLY what the doctor said. He said, in my wife's case hers could have gotten pretty bad because of the blocked azygous combined with the May-Thurner IN TIME. But being newly diagnosed, no neurologist would have recognized that.

He says that relapsing remitting is because there are more outlets of flow from the brain and collaterals can develop ... in the spine that's not necessarily true (though collaterals can develop) but there are less outlets.

It is exactly what we said before.

He also believes the body will heal itself in time when it stops attacking itself after the vein issues are resolved. Whether it fully recovers, or partially recovers will depend on how much damage you had when liberated, but like I said. He seems to think if they can fix the veins, and you haven't had "MS" for long ... a lot can go away and be resolved.
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Postby Drury » Wed Jun 30, 2010 9:18 pm

CCSVIhusband

"A 10 inch balloon in her azygous" goodness thats amazing! Is it sore? Is she on blood thinners?

Equally amazing is all the news you have just given us.

Thank you and bless you both.

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Postby CCSVIhusband » Wed Jun 30, 2010 9:25 pm

Yes, she said she's sore at 3 points ... the incision site, and all ballooning sites.

She says "this is not placebo" and "there is no way anyone going through a 'sham procedure' for this Buffalo study won't know they didn't get the ballooning if the incision site is the only sore place they have".

She is on Plavix for 3 months ... and continuing her MS meds "for now" ...

We can't wait to tell her neurologist about this because of his comment about how "we don't know, but MS is probably limiting bloodflow to her leg".

We're going to tell him ... uhhhhhh, you might want to check out this CCSVI theory now ... Too bad he's one of the top drug researchers in the country.

Though, to give credit, he didn't totally dismiss CCSVI when we first brought it up, he said it was "an exciting theory" that "needs further testing".
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Postby NotFound » Wed Jun 30, 2010 10:38 pm

Thanks for the big post detailing your conversation with specialists.

I appreciate you looking out for your doctor and not revealing his name.

Now, if you were from California... I might not have appreciated it so much (because THAT would mean the doctor is local to me) :lol:

Joking of course. The details are priceless, however. We are gaining more and more knowledge about this and it makes me NOT to jump on the first (OK, second :roll: ) available opportunity to get treated no matter what.
Last edited by NotFound on Thu Jul 01, 2010 2:08 pm, edited 1 time in total.
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Postby MaggieMae » Thu Jul 01, 2010 4:12 am

My husband's leg is also red in addition to being swollen. I had read the description in regards to May-Thurner and the left leg.

We'll never find a local doctor without the help of those on this web site. I tried on my own and didn't get any responses. I am sitting here in tears right now - this is getting to be too much to handle.
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Postby Algis » Thu Jul 01, 2010 4:24 am

Someone is gonna pop up MMae; I am sure :)'


Don't be desperate or sad, it all will be fine ;)
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Postby CCSVIhusband » Thu Jul 01, 2010 4:47 am

MaggieMae ... you can contact ANY vascular surgeon or IR about May-Thurner ... it is a condition outside of CCSVI.

They have to check that for you - go through your PCP and get a referral (you might not even need one if you exhibit symptoms).

And then while you're there, mention CCSVI in addition to it and see if they'll "have a look while they're in there" because they do have to go in there to look for May-Thurner.

That's what I'd do.
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Postby rssugg » Thu Jul 01, 2010 5:25 am

He seemed to imply neurologists aren't ever going to be on-board with this, until CCSVI is separated from MS. And then it's going to be 'taken' from them. He said, this makes more sense than any "the body turns on itself for no particular reason 20-some years into your life theory".


This is exactly why I am encouraging doctors and activist (like the crappy NMSS) to shift their paradigm and wane the neuro community off of the MS teet. How can a neuro continue to support MS patients if they arent best suited to treat the disease?
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